Provigil for MS fatigue

Rusty quoted a report back in May that Provigil (modafinil) was no more helpful than a couple of cups of coffee. I have to step in here and make a couple of things clear – well, “clear” as I understand them. Provigil is a drug used primarily for narcolepsy, a serious sleep disorder. As a person living with the poorly understood disease of MS, I can only imagine how that must have made people living with narcolepsy feel – “Just drink more coffee and your disease won’t be an issue.”

Provigil, like many drugs that we take for MS symptoms, seems to have a “we’re not sure how it works, but it does” factor. It is widely assumed that the drug works on one of the neurotransmitters (dopamine) in affecting fatigue.

Most of us know very well that these neurotransmitter chemicals live between our axons or nerve endings. They are the substance through which nerve firings occur. We also know that some of our damaged axons do not fire strongly enough to pass signals to the next due to demyelination.

I’ve spoken on HealthTalk programs about the central nervous system as a complex electrical system, which is affected greatly by heat. The way the drug may work on dopamine may help many of us as we (in the northern hemisphere) move into summer.

It seems to me (and this is just me) that if a couple of cups of coffee helped us in this way, Starbucks stock would be through the roof.

There is something else to consider about fatigue. Many doctors and researchers see fatigue as two separate issues – one physical and the other cognitive â€“ and prescribe different doses for each (on average 100mg for physical and 300 mg for cognitive). Again, not something that coffee or caffeine would address.

The drug is not cheap and as it is “not approved” for use in MS patients (I’ll explain if anyone needs off-label prescriptions detailed), can be very expensive. I had to go through several hoops to get my prescription paid by my insurance.

Most of my contemporaries who use Provigil or other anti-fatigue meds self-dose, with their doctors being fully aware. (Note: Don’t self-dose, self-medicate or take yourself off a drug to “see if it’s working” without your doctors knowing about it. Yet another reason you should have a good working relationship with the doctors and nurses at your provider’s office.) Some nibble at a tablet all day; some take one in the morning, one at noon and not later to salvage sleep; still others (myself included) use it for special occasions (or, in my case, tradeshows).

I think of these drugs as a withdrawal slip from my energy bank. I can take Provigil for a few days (four at tops) and “borrow” energy from later in the week. I’ll make it through the event, but I’m going to pay for it later. It’s just one more way I am taking control of my disease when I can or really need to.

Sometimes I shake my head in wonderment at what we have been told, heard or think for ourselves about MS. I wanted to get that out of the way and open the discussion about Provigil, Amantadine and other drugs you might use for fatigue.

I’d also like to open the floor to discussion about rumors and third-hand information you hear about MS treatments. It seems there are a lot of misunderstandings out there and we should address them.

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ABOUT THE AUTHOR

Trevis Gleason

Trevis L. Gleason is a food journalist and published author, an award-winning chef and culinary instructor who has taught at institutions such as Cornell University, New England Culinary Institute and...read more